Tag Archives | Ontario Disability Support Program (ODSP)

Deficit-Based Assessment

I’m participating in a blog hop over at With a Little Moxie (http://www.withalittlemoxie.com/)deficit-based assessment this week about Early Intervention programs…check it out, because there are some really fantastic posts.

1. Therapy for Our Child with Down Syndrome – Meriah Nichols of With a Little Moxie

http://www.withalittlemoxie.com/2012/05/therapy-for-our-child-with-down.html

2. What happens at a 2 year Early Intervention Evaluation?

http://blog.gretchenmather.com/2012/06/07/what-happens-at-a-2-yr-early-intervention-evaluation/

3. Melanie’s Mania: My son IS the Sport!!

http://melaniesmania.blogspot.ca/2012/06/blog-hop-my-son-is-sport.html

4. Birdie and the Child Find Committee. . . via Riding the Crazy Train: Diary of a Delirious Mom

http://delirious-mom.blogspot.ca/2012/05/birdie-and-child-find-committee.html

5. Life is Beautiful: What is an IFSP?

http://teal915.blogspot.ca/2012/06/what-is-ifsp.html

6. NutsaboutNathan

http://nutsaboutnathan.wordpress.com/

I’ll update this post as more blogs join the blog hop.

A Common Theme: Negative Feelings About Deficit-Based Assessment

I’ve never worked with children with disabilities below the age of 3, so I know very little about Early Intervention teams, the methodologies that they use, or eligibility criteria. Reading these posts was, in that sense, very educational for me.  I’m always curious about how things operate in areas of the sector in which I haven’t worked, even if the information pertains to places in which I haven’t lived or worked.

I kept coming across a theme in the posts that I relate to both professionally and personally, though: experiences of deficit-based assessment. It’s difficult to deal with having your child constantly assessed, and keep hearing from therapists in meetings and in reports about how delayed your child is, especially in relation to other children. This sort of deficit-based assessment for services wears on anyone after a while, and it’s a part of the support systems with which I’ve always had trouble.

Why I Dislike Deficit-Based Assessment

Even though some Ontario funding applications have a space to talk about the individual’s strengths, the bottom line is that supports are allocated by how “disabled” the person is and how well the person’s support system assists with managing the challenges associated with those disabilities. Deficit-based assessment is exactly what it sounds like: Focusing on a person’s deficits to determine their eligibility for services, and not their strengths. In the age groups with which I’ve worked, deficit-based assessment is a relatively direct way of obtaining information, especially as services have started to require forms and reports designed to facilitate easy sharing between agencies or team members.  A question such as, “Does the individual require assistance with bathing?  Yes, No, Reminders only”, with checkboxes, lets the individual give specific information that an agency may require to assist that individual to set and reach goals.

Deficit-Based Assessment Feels…Is “Dehumanizing” The Right Word?

However, when I assisted individuals and families to read reports or to fill out intake forms and applications for funding, I found myself constantly apologizing:

“I’m sorry that this is so intrusive. If we get all this information once, then we never have to go through another intake form.”

“I’m sorry that we’re focussing so much on the negative. We just need to let them know what it is specifically that your child and your family need assistance with and what you’ll use the funding for.”

“You may read some difficult things  in this report, but you have to remember that this is your child at one point in her life. There have been improvements since the last report and there’s no reason to believe that there won’t continue to be improvements if you continue with the plan you discussed with the therapist.”

I think I’m especially sensitive to deficit-based assessment because of my experience of applying for Ontario Disability Support Program income supports after I had my stroke. Although I’ve since had many positive experiences with ODSP since, both as a person receiving supports and as a professional, I cried after my first phone call with them – I told Dad that they made me feel “handicapped”.

It seems to me that applying for supports should be more of a strengths-focused process, but I struggle with how to make it so. I do suggest that people try to keep the focus on the person’s strengths as much as possible, within the framework of how supports are currently allocated and evaluated. For example, at a meeting with therapists, perhaps the parent could suggest that the meeting start by everyone at the table stating what they think the child’s greatest strength is.

How do you think we can keep reminding ourselves and support people of the strengths of the people with disabilities in our lives?

 

 

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Encore Post – Work and ODSP: The Case for Providing Choice

This is a reblog of a post I wrote about working while on ODSP. I have some more things that I’d like to say about it, and wanted people to see this post for context. Back with new content by Monday at the latest. :) – Sarah 

When I first started volunteering with people with intellectual disabilities, long before myODSP brain avm and surgery, I was perplexed as to why the people on ODSP that the agencies supported didn’t work more.

Shouldn’t Everyone, Even Those on ODSP, Work if they Can?

I knew that many of these people were on Ontario’s government support system for people with disabilities: the Ontario Disability Support Program (ODSP). I knew that you could only make a certain amount of money each month before your earnings started to affect how much you got from ODSP each month. And I knew that many people with disabilities were highly motivated to stay on the ODSP program because ODSP provides medical benefits that most jobs that a person with intellectual disabilities would not be able to obtain.

However, being still in my teens at the time and being blessed (cursed?) with an over-developed sense of fairness, I wondered why, if these people couldn’t work for pay, they didn’t volunteer more. There were definitely places in the community that were happy to have them volunteer.

Why did I have to go to school all day, 5 days a week during the school year and then spend 5 days a week working all day, and my parents have to work all day, every day to keep my family going, when the people that I was volunteering with could simply decide that working wasn’t something that they wanted to do, and sit around and collect a cheque?  The question festered in the back of my mind. I know that it festers in the back of many peoples’ minds.

A Change…but Why?

Fast forward years later, after the brain AVM and the surgery, to working with youth with intellectual disabilities. Not very many of the youth with intellectual disabilities that I worked with decided that they didn’t want to work when they were done school, but there were a few who did. I counted them as successes in my program, because, even though they weren’t out and doing something, they truly were doing what they wanted to be doing. I’d have rathered that they be out and working, because I knew they were going to get bored very quickly, but it wasn’t what they wanted. So we planned for them to be home.

I hadn’t resolved for myself why this had become “okay” for me at this point, except that I now strongly believed that people should be allowed to choose what they wanted to do in life – no matter what I, or anyone else, thought they “should” be doing.  It wasn’t until a debate on an internet  message board with somebody who thought that people with intellectual disabilities shouldn’t be getting any help from the government or government agencies at all, that volunteer service would more than provide for their needs if we’d just let it (*that* particular conversation got me right riled up, let me tell you) that I sat down with a pen and paper and worked out for myself exactly why I felt income support for people with intellectual disabilities was necessary and why I thought they had every right to decide exactly how much or how little they wanted to work while they were receiving it. That cemented my change of heart about what people on ODSP should/should not be doing.

When It’s Not Your Fault that You’re Not Wealthy Enough to Choose…

People who get to the point where they can decide how much they want to work usually do it in one of two ways:  They come into adulthood independently wealthy (or, by some twist of fortune, become independently wealthy), or they work really damn hard to get to the point where they can retire early or at least take a reduced schedule…and you have to have a fairly high-paying job to allow you to do this.

People with intellectual disabilities generally don’t have the option of going to school to get the education required to get a really high-paying job that’s going to allow them to retire early, or have a lot of money to invest. You can’t invest while you’re on ODSP.  In fact, you can’t have more than $6000 in your bank account at a time when you’re on ODSP, or you’re cut off.  The money you get is for survival, not for building a future.

It cuts down the options. No savings. No education. They can’t make the choices we do, because they don’t have the monetary resources to make those dreams a reality, nor the options of going to, say, college or university to get better-paying jobs.

In fact, for some people, meeting their basic needs on their monthly ODSP allotment is a dream that they can’t make a reality.

Once I realized how far behind the eight ball not just people with intellectual disabilities, but people with disabilities in general are in society, it made me look with more patience and compassion on those who chose not to find work while on ODSP. I did choose to work. But I’ve been blessed with a good education and very supportive family and community to help fill in the “gaps” that have made working difficult for me; not everyone is so lucky.

I’m not trying to be negative; I sometimes just need to acknowledge the realities of the world that we live in.

I like to believe in the hope of fabulous things even in disappointing times.  I hope you do too. :)

Have a great weekend…

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John Kerr: Benefits Cut, Fit to Work?

And so it begins in Britain. John Kerr of Dundee, Scotland, who is blind, deaf, eats via tube, and doesn’t communicate verbally will have his benefits cut on June 7th because the person who filled out forms on his behalf that the Department of Works John Kerrand Pensions required made an error.  I don’t know what forms, or the nature of the error; media coverage on this over the Internet is scarce. According to disability blogger and advocate Nicky Clark, however, the form was substantial (over 30 pages), and Kerr’s options now are either to find employment or go through an appeals process to attempt to get his benefits reinstated.

http://nickyclark.blogspot.co.uk/2012/05/shame-of-blame-game.html

Waiting on John Kerr Details

I admit that I’ve known about John Kerr and his story story since last Friday and held off on blogging about it. I’ve wanted to see what the Department of Works and Pensions would do.  I’ve seen the Ontario Disability Support Program send letters saying that income supports have been cut off because the recipient hasn’t provided requested information, and that they can appeal the decision; often a phone call to the intake worker assuring them that the requested information is indeed on its way is enough to get the suspension reversed before the next cheque is issued (depending on the date and the information required). But according to Nicky Clark, this error is going to take weeks to rectify, potentially leaving John Kerr and his caregivers in a very bad financial situation.

Who’s to Blame for What’s Happened to John Kerr?

I’ve seen arguments that the people who filled out the form for John Kerr need to lie in the bed that they’ve made regarding his benefits cut. After all, the government can’t be held responsible if someone makes a mistake and creates a situation like this, whether they intended to or not, they argue.

My technical writing training tells me otherwise. If these forms are so unclear that someone could make a mistake so crucial that it costs them their benefits, then they’re not well-designed enough. The design flaw could be a number of things (or many of them):

  • It’s not clear on the form what the response process needs to be. Where does the form need to go? By what date? Addressed to whom?
  • It’s not clear how to respond to respond to the questions.  On scale questions, which end of the scale is most severe, and which is least severe?  What if two answers apply to a given question? Can you attach paper if you need more than the allotted space to comment?
  • The questions themselves are unclear.  What if you have a learning disorder and you’re unsure to whom you should go for help? What about people with low literacy levels?
  • It’s unclear how crucial accuracy is. Clearly it was for this particular form.

Obviously a form can’t be developed that meets absolutely everyone’s needs, but there *is* a process by which technical writers try to make documents as accessible to as many people as possible. Government forms aren’t particularly user-friendly (as I’m sure all of you know), which is why I used to spend a lot of time with people I supported and their families assisting them to fill out forms – precisely so this sort of thing didn’t happen. Not that I’m perfect and don’t make mistakes, but I’ve filled out a lot of the forms now and find them a lot less terrifying than people I worked with and their families did.

No One Should Live in Fear of Losing Benefits Over One Mistake On a Form

Or two…or three. This story and its suggestion that you have to be a robot who doesn’t make mistakes instead of a human being who may be dealing with multiple challenges as you fill out a large government form suggests to me that this is just another way that Britain is experimenting with thinning the ranks of people on benefits. It’s underhanded and insidious, as many people (like John Kerr) do need substantial assistance filling out the forms, and are powerless as to whether it’s submitted with mistakes or not.

And it’s just plain not right.

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Musings About “Inspiration Porn”…

This week, I was introduced to a interesting concept by tumblr bloggers thoughts_of_nothing and and gimpunk some other tumblr bloggers with disabilities about which I’ve never heard: “inspiration porn”. It all focused around this picture, which I’m sure many readers have come across if they’ve spent any time on Facebook or Pinterest:

inspiration porn

Heck, it was on one of Running Steps’ Pinterest boards when I went to check. I’ve since removed it.  It had just never occurred to me that I should find it insulting – but I should have.  I’m going to be evaluating what I put up on the Pinterest boards much more closely from now on, to see if the pins fall into that “inspiration porn” category.

“Inspiration Porn”: Is the Label Fair? The Case Against

It’s not that Scott Hamilton (and Oscar Pistorius, the athlete in the picture) hasn’t accomplished amazing things. And the value of that particular piece of photography for people with disabilities is that it encourages those who may have the resources to take life by the horns, as Hamilton did, but are letting “I can’t, because I have a disability” hold them back to get back out there and start saying, “I can,” again.

“Inspiration Porn” Is the Label Fair? The Case For

Not everyone with disabilities has the resources and supports that Scott Hamilton had/has to get out there and make their dreams a reality. And for those that are in that boat – sometimes a positive attitude just isn’t enough. A positive attitude isn’t stopping the British government from people whose disabilities are far too severe to allow them to work from having their benefits cut off, forcing them to look for jobs that they have no hope of getting when they are in such ill health. Closer to home (for me), cuts to the Ontario Disability Support Program make accessing its Income support component significantly and increasingly difficult for new applicants each year, and cuts to both the Income Support and Employment Support programs make it more and more difficult for people who are on the program to move off of it.

All of this as the unemployment rate for people with disabilities in the United States edges toward almost twice the rate for people without disabilities, and as New York City continues to put up stink about making even more than 1% of its taxis accessible.

Given these realities, slogans like, “The only disability is a bad attitude” are almost an affront. “Inspiration porn” only makes people with disabilities who are often trying very hard to cope with issues like chronic physical/mental/emotional pain, constant hospitalizations, fears about where the money to pay for housing/food/medical bills/their family’s needs is coming from (whether it’s because of unemployment or underemployment or income support cuts) feel badly because they can’t muster the support, strength, or enthusiasm to get out there and start living their dreams as people with disabilities.

So, is the “inspiration porn” label fair? Unfair? Somewhere in-between? I think I may need to think about it a bit more. It’s certainly an attention-getter, and it’s probably going to make my blog show up in more porn-related searches than usual, but I think I’ll let you decide from here.

Before I Get Attacked

I don’t think any of that means that Scott Hamilton should stop doing what he does. It’s not his fault that people are struggling. And, like I said, I think his message has a place. Not just for people with disabilities, but for everyone. Regardless of your life circumstances, a bad attitude will get *anyone* stuck like nothing else can.

But I do understand why some people with disabilities take have adopted the phrase “inspiration porn” for these kinds of images, and why it hits them particularly hard.

I need to think about this, and write some more about it. Have a great weekend, everyone.

thoughts_of_nothing’s blog about “inspiration porn”: http://thoughts-of-nothing.tumblr.com/post/22192050450/blogging-against-disablism-day

 

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Why I Write About Welfare Benefit Reform in Britain

Welfare Benefit Reform: Tuesday

Well, it seems clear that Britain’s movement to fight welfare benefit reform and deep cuts to disability income supports suffered a major blow on Tuesday.

http://diaryofabenefitscrounger.blogspot.com/2012/02/warning-toxic-government.html?spref=tw

I don’t know all the particulars. I still don’t totally understand it all. I know that some legislation (which already went though at one level of government) to mitigate effects of the cuts on the children with disabilities was struck down at another.  Classy. I’ve been reading on Twitter about some awful language from the Conservative Members of Parliament about people with disabilities: “the great unwashed”, “retards”, people that think disability is a “lifestyle choice” and so forth.

Stay Strong, Britain…

I still don’t understand all  of what’s gone on here and what continues to go on. What’s struck me the most about the whole thing, and its plainly visible in the post of Sue Marsh’s to which I’ve posted (and the comments on it), is the desperation. Sue put together the Spartacus Report to try and show the British government the impact of the proposed welfare benefit reform, and has put countless hours into coordinating people and efforts even while hospitalized. I’ve read a lot of her stuff lately, and I don’t doubt her when she says that she’s not going to give up – but I’ve also never heard her sound so desperate.

Read this too from the woman who has been working with Sue. Desperate.

http://benefitscroungingscum.blogspot.com/2012/02/death-of-decency-wrb.html

Why British Welfare Benefit Reform?

I’ve been asked why I’ve been writing on the welfare benefit reform situation in Britain. A lot of my Twitter followers (and the people I follow) are involved with the disability community in  Britain, so I see a lot about it. There seems to be a perception that people using Britain’s income supports are all “scroungers”, and the government seems determined to deal with the inevitable few who abuse the system by punishing everybody who uses it.

And you don’t have to understand all of it to appreciate that people are very, very frightened of losing support that allows them to live and being told to go out and find jobs when they legitimately can’t work.  As Sue says in her post, “Yes, even Blair backed down from sending cancer patients to the jobcentre.”  Apparently this government isn’t prepared to.

I write about what’s happening in Britain, to the best extent that I can, because I hear the “they’re all scroungers” attitude from politicians in Canada and the United States, too. It has reached a fever pitch recently, particularly in the United States with the election approaching.   I’ve heard Republicans talk about cutting food stamp programs, refer to people on social support programswelfare benefit reform as “raccoons” who will  just keep coming back as long as you feed them, and suggest that people with disabilities could have their needs met through the generosity of churches and community groups instead of  having them rely on income assistance.

In Ontario, monthly ODSP support still keeps individuals below the poverty line. And yet the focus on the very small amount of people who manage to abuse the system to get as much money out of it as they can, rather than the vast majority who can barely afford to both pay rent and eat each month.  I also remember, several years back now, when Ontario Premier Mike Harris declared that people make a choice to be homeless, which always leaps to mind for me when I read stuff like, “Disability is a lifestyle choice”.

What’s happening in Britain could easily happen in Canada or the United States, too. And yet I’ve not heard or seen one news story about it here.

I write about what’s happening in Britain with welfare benefit reform because it’s a current event that potentially affects us all. Disability news needs makes to make the world news too – let’s do what we can to make sure it does!

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A Bit of a Rant on Information Accessibility

Another Post About Information Accessibility

Earlier in the month I talked about information accessibility and about how sometimesinformation accessibility systems of getting information to people aren’t set up in a way that’s convenient or even comprehensible (http://www.girlwiththecane.com/information-accessibility/). I found the mother of all examples of this last Friday, and thought I would share it with you.

Ready to Start Driving Again

I’ve had a seizure disorder since my second stroke, caused by scar tissue left after the brain surgery. Because of the seizures, my driver’s license was taken away from me almost immediately after the stroke. In some ways, not being a licensed driver in a spread-out rural community without any public transportation has been just as difficult as learning to live using one hand, but that’s a story for another day.

I take anti-seizure medication, and am finally to the point where I’ve been seizure-free for over a year. This means that I can start the process of getting my license back again – under Ontario’s graduated licensing system, it takes two years to become a fully licensed driver. I decided to write the knowledge test that will let me drive on most roads, with some restrictions, as long as there’s a person who’s had their license for at least four years in the car with me.

Information Accessibility and Me

The nearest place to write the knowledge test is 45 minutes away, so I had to arrange to have my father drive me. I looked on the Ministry of Transportation website to see what ID I’d need to bring, but found information confusing. At one point it appeared that I just needed one piece, and at another point they seemed to want two. I called the phone number of the Ministry of Transportation office in the town where I’d be writing the knowledge test.

The rest of it went a little like this:

1. Voice mail gave another number for people calling concerning licensing *or* two extensions.
2. The phone number was for a bakery.
3. The first extension took me to Service Ontario, a government service centre that doesn’t know anything about licensing. The woman on the phone referred me to the website.
4. When I explained that I’d already been to the website and was confused by what it was saying, she said that I couldn’t ask the driving test people because there isn’t a line for the public to that office.
5. She went to the website to see if she could find the answer to my question.
6. Sensing at that point that I was really annoyed, she said it was a slow day, and she’d make some phone calls to see if she could get the answer and call me back.
7. Which she did. But she still only had speculation – no concrete answers.

Big Questions about Information Accessibility

I do appreciate the Service Ontario woman’s attempts to help me. I know that Service Ontario centres are generally very busy. And I understand that there’s likely no public line to the offices that do driver testing just because the employees don’t want to spend the day dealing with nuisance calls like mine.

But we’re back to the issue of information accessibility. You don’t have to have a high level of literacy to write the knowledge test – you can arrange to do the test orally. I’ve never supported someone with a developmental disability to get a driver’s license, but I know it’s been done. What if I couldn’t read the website? What if I didn’t have Internet access?

What if there’s a question that I just need a human being to answer?

At least the Ontario Disability Support Program takes a stab at information accessibility. Their reading material can be difficult to understand, yes. But there’s a direct phone line to them, with places for people to leave a message for their income support specialist, and the income support specialists have designated days where it’s more likely that you’ll reach them if you call. It may take them a bit to get back to you, but it’s always been my experience that they do (at least in my part of the province).

The government really needs to do some thinking about information accessibility. If government services are going to keep referring people to the Internet for information, there needs to be an overhaul in how the government views the Internet as information tool – websites need more plain speech and diagrams, simpler graphic user interfaces, and more intuitive processes. More public access to Internet is also necessary.

Or, they can put more human beings on the phones.

Which would ultimately be cheaper, I wonder?

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Information Accessibility – Information for Everybody

Information accessibility issues get very little, if any, attention.information accessibility

Information Accessibility

We’re all familiar with physical accessibility issues, and we’re becoming more familiar with accessibility issues around hearing impairments, visual impairments, and even web design accessibility. But we’re only starting to learn, it seems about making information accessible (which can use elements of all other types of accessibility).

Let’s look at this example: Getting information about the Ontario Disability Support Program

  • Even finding the phone number in a phone book would be too much for some of highest-functioning (for lack of a better term) people with intellectual disabilities that I’ve supported to find without some assistance.
  • The voice mail system at ODSP makes you key in an extension based on the first letter of your last name. You have to listen carefully, because the letters are not presented sequentially (for example, you may have to key in a certain extension if your last name starts with A-L, Q, T, X or Z). Most times, the call goes directly to voice mail.
  • ODSP does have a web site, but it’s confusing to use and provides limited information on the program. You are referred to your local office, which can be difficult for people to ascertain.
It’s confusing even for people without intellectual disabilities.  It’s not good “information architecture”, as they say in the technical writing world. Depending where you are, other factors make the information even more difficult to access.

Different Region, Different Information Accessibility Needs

I remember going to quarterly regional meetings of the transition program in which I once worked, hearing about the fabulous things that everyone else was doing, and thinking, “That just won’t work where we are.” I wasn’t trying to be negative. I just saw us facing different access challenges, as a very small town, than the people from larger centres did: no public transportation, lower literacy rates, fewer people with internet access in the home…it affected the way families that I supported understood their options for their children once they graduated, and often it meant an intensive level of support for some students and families. I felt like we did things differently than the programs in the larger centres, out of necessity, because needs of students and families were different.

Those Darn Assumptions

Which isn’t necessarily bad.  But there are assumptions out there now that *everyone* has internet access and knows how to use it effectively. A number of factors may make this simply not true, and it keeps people (and not just people with intellectual disabilities…if I’m having trouble getting what I need from a government website, then other people are people are as well) from getting information that 1) they’re entitled to and 2) that they need.

It creates inequalities, and therefore needs to be addressed, whether it’s through providing more support to assist people to understand information to or restructuring information architecture so that it makes information more accessible and understandable…or both.

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International Day of Persons with Disabilities

International Day of Persons With Disabilities

international day of persons with disabilities

December 3  is the International Day of Persons with Disabilities. It’s a day to celebrate the contributions of people with disabilities and to raise awareness about their rights.

I knew that I wanted to blog about this in some way today, and I spent a lot of time thinking about it last night, and kept coming back to what Michael Bloomberg saying that having making all the cabs in New York accessible wasn’t necessarily what people with disabilities wanted.

What Do People With Disabilities Want?

I’m not a scholar in the field, but I’ve worked with people with disabilities for over fifteen years, and I’ve been living with my own disabilities for over a decade. I think that our needs are fairly simple.

  1. Access to Buildings When we’re cut off from buildings and from areas in buildings, we’re cut off from experiences and from participating fully in the community. We don’t have choices and opportunities that everyone else has.
  2. Access to Resources The current struggles to make web pages more accessible, to make menus easier to read, to make the justice system more navigable, etcetera, seem like overkill to some people without disabilities. But when you can’t see a computer webpage because you’re red-green colour-blind, or you can’t read a menu because the print is too small, or you can’t don’t understand what your public defender is saying to you because you’ve got an intellectual disability, you’re at a distinct disadvantage because of your disability.
  3. Respect for Rights and and Knowledge of Responsibilities  People with disabilities need to live in communities where, like everyone else, they have rights and responsibilities. People with disabilities, adults and children, are at a much greater risk for bullying or assault, sometimes by people are supposed to be taking care of them (paid and unpaid). Abuse can come in all forms (verbal, sexual, financial, violation of privacy, theft). Other rights that get disrespected are as follows: the right for a person to make their own decisions about their life, to be in relationships, to try new things, and to make health and/or money decisions. People with disabilities deserve to have rights abuse allegations take seriously, and need to understand that they have the responsibility to behave in ways that respect others’ rights. Failure to do so will result in consequences for them, just as it would for people without disabilities.
  4. Opportunities to be a Part of the Community  Everyone has ways that they can contribute. Community members need to be open to having all sorts of people as volunteers and employees in the community and makes everyone feel welcome at community events.
  5. People-Centred Supports for Assistance When Necessary  Not everyone needs help all the time, but sometimes something comes up with which people need assistance. It’s always nice to know that someone will be there if you need, whether it’s a paid or non-paid support.
  6. Income Support for Those that Can’t Work That Actually Reflects the Current Cost of Living  The amount that individuals receive on the Ontario Disability Support Program  leaves them at a poverty level.

The Challenges

Right now, setting up frameworks within communities where we can ensure that these five things are adequately addressed costs is taking a lot more time than it should. I believe it’s at least partly because educating governments about the importance of getting funding to help address these issues is taking a long time. It’s simply not high-priority.

And I think that’s partly because you can’t appreciate how vital these issues are until you’ve lived them.  I know from experience that it’s difficult to realize how frustrating it is not to be able to get into a favourite restaurant in a wheelchair until you’re in that position.

I didn’t know until a couple of days ago that International Day of Persons with Disabilities existed, and I hope it will bring some much-needed awareness to what still needs to be done.

On the lighter side, here are some people with disabilities whose accomplishments we really need to celebrate on the International Day of Persons with Disabilities:

  1. Rick Hansen
  2. Christopher Reeve
  3. Albert Einstein
  4. Terry Fox
  5. Stephen Hawking
  6. Michael J. Fox
  7. Helen Keller
  8. Ludwig Van Beethoven
  9. Thomas Edison
  10. Charles Darwin

More about the International Day of Persons with Disabilities:

http://www.un.org/disabilities/default.asp?id=1561

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Election Day in Ontario

Today, Ontario is electing a new Premier. I’m curious as to how Ontario agencies who electionsupport people with intellectual disabilities have assisted the people they support to prepare for voting. I’ve never worked with any people with intellectual disabilities in my career who have been interested in voting in an election, so I’ve never had to go through that process. But I know that people with intellectual disabilities certainly do vote in elections. And why shouldn’t they?

Issues Affecting People with Intellectual Disabilities

The provincial governments administer income support for people who have disabilities that prevent them from working. In Ontario, this program is called the Ontario Disability Support Program, and it also covers medical, dental and eyewear costs. Most people with intellectual disabilities receive at least some support from this program, or have found work to supplement their income support with the help of the ODSP Employment Supports Program. They deserve to know which party is willing commit resources to keeping ODSP income support at its present level (which is only enough to keep people living at a poverty level) and who is committed to raising it. It’s important that the people affected by the issues vote and get their voices heard.

Every Canadian Over 18 Can Vote in an Election

I understand that the concept of an election might be difficult for some people with intellectual disabilities to understand. I’ve tried to explain to people I’ve supported why they should pay their taxes, and that was difficult enough. There’s much more to an election than, “We pay taxes so that the government has money to run our schools and post offices and to pay our doctors to take care of us when we’re sick” (there was more to the conversation than that, but that was the gist). And the thing about taking large amounts of time to prepare people for things like voting in elections is that front-line workers really have too much to do already. Their days are pretty packed.

However, every Canadian over 18, whether or not they’re living with disabilities and regardless of how well they grasp the issues involved, is entitled to vote if they want to. The politicians don’t care if a vote is well-informed or if someone votes because they like the sound of the person’s name; a vote’s a vote. So if a person with intellectual disabilities wants to vote and has had no education about elections at all, we really can’t, as support people, stop them in good conscience. They wouldn’t be the first to go into the voting booth not knowing a thing about any of the names and what they stand for; they won’t be the last.

It would just be much nicer if they had some preparation, some awareness, before going in, to the extent that agencies can manage. For those people supported that indicate prior interest, it’s the right thing to do.

Good luck to all the candidates.

 

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Wheelchairs and Airline Travel

Let’s talk about physical disabilities and air travel.

“Up, Up and Away…”

I didn’t do any air travel when I was in my wheelchair, but I’ve traveled several times with my cane. Besides the fact that I’m slower going through the security scans (it takes me more time to put my cane through, take my shoes off, get myphysical disabilities computer out of my carry-on, get myself together again on the other side) I haven’t really encountered any difficulties beyond what someone with physical disabilities and a mobility aid might expect to experience: my gate has been changed at the last minute and no one’s told me, and one time I tried to get on at pre-boarding as instructed at the ticket counter, was told to to sit down and then was later told I should have gotten on at pre-boarding.

But the airlines were also more than willing to deal with those little errors by immediately offering me a ride on a cart to my correct gate, upgrading me, and just generally being pleasant and very nice to deal with. I really have no complaints.

Others with physical disabilities haven’t been so lucky.

“…taking his legs and dismantling them and giving them back broken.”

I had no idea that they dismantled wheelchairs to make room on flights.

http://www.kfor.com/news/local/kfor-airline-returns-mans-wheelchair-in-pieces-20110817,0,6355799.story

As long as my journey back to mobility was, I’ve never known what’s like to have to give up my walking aid to a stranger, knowing that they’re going to take it apart and trusting that they’re going to get it back to me in one piece. I imagine that if you fly a lot in a wheelchair, you learn to live with that reality, but I would think that there’s always got to be some anxiety behind it. We talked in the posts about disability sensitivity about how even having another person even touch or lean on a wheelchair can be anxiety-producing for its owner, because the chair really is a part of the owner’s personal space. Imagine being presented with that part of yourself in pieces at the end of a flight by people that you’d entrusted it to.

And apparently this happens more that we hear about, when in many cases it’s not necessary to break down the chair.

Before dismissing this story as a man being a “victim”, as one of the commenters did, just think about it. Think about feeling physically powerless for a few flight, on the understanding that you’ll get your power back when you land – and then you don’t.

Think about how it feels to be respected so little, that people hand your legs to you in pieces at the end of the flight and just say, “Sorry”.

Soon after returning home from Ottawa Rehabilitation Centre, I had to call the Ontario Disability Support Program. I don’t remember who I talked to. I’ve since had many, many positive dealings with them, through work and in my personal life. But I wasn’t used to dealing with government services at all that point; I was overwhelmed by my new circumstances and the new information being thrown at me. When I got off the phone, I started to cry.

“What’s wrong?” Dad asked.

“They made me feel disabled,” I sobbed.

Let’s do that to as few people as possible, and let’s start by treating people in wheelchairs with respect on the airlines.

 

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